Lessons Learned Through Caregiving
Lessons Learned Through Caregiving
Each year I take some time to reflect both on the amazing gift my wife was in my life and how my love for her still burns feverishly in my soul. I learned so much during my time with her, and I am positively, forever changed for having been her caregiver.
It was in October 1998, shortly before her 31st Birthday, that Desiree was diagnosed with Stage 3B breast cancer while we were living in the United Arab Emirates. She lost her valiant battle with metastatic breast cancer at Mount Sinai in New York City roughly 11 years to the date of her diagnosis. You can learn more about Desiree in Helping Patients Face Death, She Fought to Live.
A huge, life-altering event can give you a whole new perspective on life. I hope my experience and the lessons I’ve learned from caregiving can inspire and help you in your own journey.
Lesson #1: Tap into your resilience.
The doctor first broke the news of her breast cancer to me, and when I asked Desiree what she wanted to know she told me, “Only the next steps.” From that moment on, I did as she instructed and only ever told her the next steps unless she specifically needed or demanded information.
This led to the birth of Robert, her surrogate. In order to do the best I could for her, I had to contemplate death, pain, and sadness. I needed to internalize all of the decisions I was making as if they were my own. I later discovered this is called secondary traumatic stress syndrome.
However, through all of this, we rediscovered our resilience. It was resilience that allowed me not only to excel at work but also care for Desiree with unwavering resolve. Resilience enabled her to complete her MD/PhD from Mount Sinai, all the while dealing with the effects of standard chemotherapy, radiation, an autologous stem cell transplant, and bilateral breast reconstruction. Resilience offered us a deeper understanding of optimism and hope.
Whatever challenges you may be facing, I genuinely believe that tapping into the resilience we are all born with is instrumental for you to function efficiently and effectively--not only as a caregiver but as the champion of your life.
Lesson #2: Embrace your vulnerability.
Despite Desiree’s cancer returning in 2003 and her dealing with many complications and difficult treatments, she thrived. We thrived. I learned that self-sacrifice didn’t serve me. To be a caregiver, I had to make sure I was prioritizing my own needs as well. While it seems valiant to run ourselves into the ground for someone or something we love, I quickly learned it would have been one of the most selfish things I could have done. How could I have been of any use to Desiree if I was not taking care of myself?
No matter how much I wanted to be Superman, it was impossible. I used to pride myself on doing things alone, not asking for help, and keeping a stiff upper lip. But I needed to ask for help. I needed to put aside my own pride and become vulnerable. This shift in mindset forever changed me as I now realize that true strength lies in being vulnerable. Going at it alone is a type of self-isolation. Even Superman can’t isolate himself from the warmth of the sun.
Whether you’re a caregiver or not, how you show up is just as important as reaching out for help.
Lesson #3: Pick opportunity over obligation.
Caring for Desiree, I came to understand that there were only two viewpoints available to me as a caregiver: Obligation or opportunity. By obligation I mean that negative perspective of, “life has wronged us” or “life is forcing me to have to deal with all of this.”
Opportunity meant being able to provide the biggest gift I could to Desiree: To fight my own fight, rise above my ego, and attempt to give everything I am to the person I love. I realized that it is when we pursue something wholeheartedly for a cause greater than ourselves that we live with purpose.
To that end, in 2006, I watched with pride as Desiree was named Medical Director of the Palliative Care Consult Service at New York-Presbyterian/Weill Cornell. So much of the fight for her life was fueled by her desire to use her experience as a patient to treat patients as people first. And it was my job as a caregiver to do everything I could to help her achieve her goals--hence, opportunity.
Remember to choose opportunity over obligation in any role you assume in life.
Lesson #4: When you surrender, that does not mean you are giving up.
In the winter of 2008, Desiree’s oncologist asked me to come into his office--something he had never done before. In my heart, I knew what he was going to tell me: Her cancer was spreading at an uncontrollable rate. It was time for me to transition to being her full-time caregiver. I stopped working and slowly transformed into her hospice.
In August of 2009, Desiree was hospitalized. She knew she was dying. I knew she was dying. But we never spoke about it. Those were the rules. One day, lying side-by-side in her hospital bed, she held my hand, turned to me, and told me she was tired. I responded, “Okay baby. Rest.” I knew in that moment she was asking me to remove life-sustaining support and transition her to comfort care. Those were the last words we said to each other before her drifting into a coma and passing a few days later.
I think one of the hardest parts of being a caregiver is the feeling of impotence because we can’t “fix” the situation for the person we love. Yet, it was the realization of what it meant to surrender that empowered me. I came to define surrender as focusing on doing my best in any moment and not attaching my joy or happiness to the outcome. It was this surrendering that enabled me to live more authentically and remain present despite the situation we found ourselves in. It motivated me to direct my attention on what I could do for her in the moment and freed me from trying to control the uncontrollable.
In the end, our role as a caregiver is to support. The art of surrendering allows us to navigate all aspects of life with the least resistance.
Lesson #5: Live your life forward.
Following Desiree’s death, I felt lost. Purposeless. My role as caregiver, husband, and friend vanished in an instant. The suffering was immense, and it was not until I realized I also needed to grieve the loss of Robert--Desiree’s husband and caregiver--that I was able to take steps to rebuild my life by living life forward. I needed to believe in and welcome change back into my life. I needed to be curious about life and my capabilities. I needed to put what I had learned into action. I found that the key to moving forward is to become the caregiver of yourself: To set your own boundaries and to fill your life with what feels purposeful to you.
In the words of Teddy Roosevelt: Never stop daring greatly in the arena of your life. Live it forward.
Lesson #6: Accept all the possibilities in your life.
Having evolved with Desiree, I decided to take a leap and rebuild my life. I left my job and moved to Italy. I showed up in Rome jobless, without a home, not knowing anyone, and not speaking the language. I reimagined my life in the country of my ancestors doing something purposeful.
I also returned to school to become a certified life coach. I now live in the same small town my great-grandfather immigrated from over 100 years ago and am a practicing life coach. All of this happened because I was forever changed by my love for Desiree. I am now aware that everything changes, including the deepest parts of one’s core, after a caregiving experience. It is also my understanding of impermanence that has liberated me to fully live life. I hold onto life lightly, not tightly, in order to be open to new opportunities the changing seasons offer.
Be open to all of life’s possibilities.
Lesson #7: Always remember, “Life is a banquet.”
What does this all mean? Where does the journey lead you after the role of caregiver?
For me, it led me to deep gratitude for everything in my life and remaining open to all the possibilities life has to offer. In other words, to live life as “possibility in action.”
I am thankful to everyone that offered me and Desiree support during her life’s journey. I am thankful to everyone that has supported me during this new venture. But mostly I am thankful to my wife, Desiree, for her unconditional love and complete sharing of herself with me. For showing me the beauty in life and teaching me to live life to its utmost, or to quote one of her favorite lines from the movie Auntie Mame, to “Live live live! Life is a banquet, and most poor suckers are starving to death!”
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